Nervous

I'm sick. I can't get around that fact anymore. The home health nurse came today and my vitals were no good. On 5 liters of oxygen at rest my o2 sats were 96% and my heart rate was 140. I had a fever and night sweats last night. 

I don't want to go back to Pittsburgh to the hospital. I'm gonna try everything in my power to stay at home. Here's to more IVs and treatments. I could really use an extra prayer. If you need me the best way to get ahold of me would be text. Not much into talking on the phone right now. Love and peace to you all. -Katie

Never Giving Up

Things are getting much harder for me. Even day by day. I do still have good days though, but they are few and far between. This hasn't been a good weekend. I struggled a lot with breathing and fevers. I am still on IVs at home and they are working out okay. The only bad part is waking up early to start them and staying up late to do the evening doses. 

Other than my health, life is good. Dalton and I have grown closer since we've gotten sicker. It's nice to have someone who literally understands everything. His love is so genuine and pure. I'm so blessed to have him. 

I am tired of sitting at the house with no job. I can't wait until I get my transplant so I can go back to work! I would go to work right now but that is just not possible right now. I haven't worked since June of 2012. Most people would be happy to not have a job but sitting a home is awful, especially when you don't feel like getting out to do anything. I would LOVE to have a job right now. Not even for the money, but for the socialization. 

Dalton and I are pretty much loners but we love spending time with people. We don't get out much these days because it's so hard but love visitors. If you would like to come visit us, text me! We would love to have anyone over! And I mean anyone (unless you plan on burglarizing our house)! I know a lot of people are on break right now so I'm serious, come visit us, even if it's just for a few minutes! We'd love to see some friends!

-Katie

Home

Well, I made it home Thursday night around 9:00. Mom drove up, picked me up, and drove me back home all in one day. I think she woke up at like 3:00. I couldn't have done that! Anyway. I am still on IVs through January 4th. I was so happy to get to come home but I am already just feeling miserable. I have a fever and a lot of wheezing. But unless I absolutely cannot breathe at all, I will not be visiting any hospital or doctors office until December 26th. I'm really hoping this is just a fluke and I'm just tired and my body is just trying to catch up but I don't think so. I am working so hard to try and stay healthy for Christmas. It really is my favorite time of the year. I'm gonna go try to get some sleep, I hope everyone has a great weekend! -Katie

A Week

I have been here since last Wednesday, almost a week. I am really ready to go home although I don't feel any better. This time of the year is my favorite and I really don't like being stuck in here. I have been dealing with pain in my lungs and shortness of breath. They have me up to 3-5 liters at rest now, and 6 while walking around. It is no fun being sick, but I get past the bad feelings because I think about all I am going to be able to do soon with my new lungs. Although I would really hate to be stuck in here during Christmas, I think it would be so awesome to get a lung transplant around Christmas.
Doctors have me on the same medicines as usual. Meropenem, and Vancomycin (which I get an allergic reaction to). Since I get an allergic reaction, they pretreat it with Benadryl and that works. Nothing new is going on. I hope to go home by Thursday. -Katie

I am Beautiful

So before I post anymore blogs I want to point out a couple of things. This is real life. Real life isn't always happiness and rainbows. Real life hurts sometimes and sometimes it even sucks. Nobody should be expected to be happy 24/7. I have my bad days and I have my good days. Sometimes I want to hug everyone and tell jokes all day long. Sometimes not only do I want to rip my hair out, but I probably want to rip yours out too. Sometimes I just want to sit at home and cry all day long. And you know what? I'm allowed. I am allowed to feel happy. I am allowed to feel defeated. I am allowed to cry, laugh, curse, and smile. Having a chronic illness teaches you more than just to be strong but it teaches you how to survive. You have to make your own path in life. You can't always take the easy way out. There are going to be people who can't handle or don't want to handle what you have to deal with. And I have had so many people like that in my life. I have learned with those people you have just got to thank God for him putting them there for a while because when they no longer are there for you when you're actually sick, the least you have is happy memories to look back on. So from now on, just know that this blog can get bad and it probably will. I am entering a point in my life where things are going downhill fast. I have needed 6 liters of oxygen to walk around when just a couple of weeks ago I could go on 3-4. I am exhausted the minute I wake up until the minute I lay back down (if I even get out of bed that day). You get to read my blog and think 'oh that poor girl'. Please don't think that. I am sick, yes, but I am alive. I may not be breathing well, but I am breathing. I may not be beautiful right now because my eyes are sunken in, I am all bones and no fat, I have dark circles under my eyes, but I am a child of God and I think that I am beautiful enough.
-Katie

Really Rough Night..

With CF you can go to having a great day one minute and the next your world could be crumbling before your eyes. I had one of those nights last night. It started out with coughing tons and not being able to breathe at all. My lungs were hurting so bad and nothing they were giving me was working. I ended up taking a few different drugs and doing some treatments. I am still not feeling good and haven't been asleep since yesterday at 8:00 am. I am exhausted but can't sleep because my lungs hurt. I just wanna lay down and be comfortable for a couple of hours. Hopefully in the next hour I can get my antibiotics and I get pre-treated with Benadryl for an allergic reaction so that I can fall asleep. I am also going to talk to my doctor about giving me something else for my pain. The several different meds they tried last night didn't help at all.. I just cuddled with my blankey all night.. I am praying today is a better day. I want to go home so bad. There is only 11 days until Christmas and it is my favorite holiday (along with a few days following up to it). I wanna come home!!!
-Katie

What A Feeling!!

So, at the beginning of the week I said if I could just get through this week I would feel a lot better and I was so right.. I am ecstatic that I am on the transplant list. I'm not gonna lie, for the longest time I did not want to be on the transplant list. Dalton and I would talk about it often and it would usually end up in a bickering match. I wasn't ready and he was. I could not make up my mind whether I even wanted to go through with it. I wasn't scared of the surgery, not at all. I wasn't scared of being on the vent after surgery, I wasn't afraid of ECMO if it came to that, I was simply afraid of rejection.

When a patient gets new lungs (or any organ for that matter), there is a possible chance that rejection of the new organ can occur. Your body recognizes that the organ shouldn't be there and basically attacks it. Unfortunately, lungs are probably the most difficult to transplant. My fear of rejection was so intense that I had an internal fight with myself everyday. I basically kept my fear hidden because no one wants anyone to know their deepest fear.

I can honestly say I am not afraid of anything else.. I am not afraid of dying, in fact, I have prepared myself to die. When you are in this kind of situation, it is best to prepare to die. You have to make sure you have all of your important paperwork; a will, power of attorney, financial power of attorney, etc. I'm 23 I shouldn't even know what a power of attorney is, but I do. If I was to go into coma right now, there is a binder that Dalton or my parents could go to and find every piece of information that they need. From what to do from a health standpoint, to what company my house payment needs to go to. It's all there.

Another reason that I was putting this transplant off for as long as possible was because of the new drug combination that Vertex Pharmaceuticals is coming out with, possibly within the next year. How would you feel if you had fought a disease all of your life, spent a lot of time in the hospital, had multiple surgeries, fought for every breath and all of a sudden a pill could fix your problems? This pill is supposed to treat the underlying defects where all of the problems start and it is showing good results. I have been sticking it out, waiting for as long as possible to hopefully get my chance with this drug but my time is closing in on me and I don't think it is possible to wait that long anymore.

On Wednesday at our clinic appointment, with a PFT of 17% on 4 liters of oxygen and still feeling very short of breath I relayed my concerns of rejection with Dr. Pilewski. Although I had told him this concern before (so he already knew what was coming) he listened and cared. He never tried to pressure me. I told him I still wasn't ready and that I was still scared of rejection. This is really something you have to figure out on your own. No one can make this decision for you. You have to want it for yourself and be totally committed to taking on the responsibility of a whole new life. After clinic on Wednesday I was admitted into the hospital.

I have been doing a lot of thinking and reflecting on the past few months, especially on Wednesday night. I am seeing my old friends have the time of their lives. I have lost so many friends due to my Cystic Fibrosis, I hardly have any left. I don't have any close friends except Dalton and well, he is stuck with me! There is nobody I feel like I can just text to be texting. Where did everyone in my life go? Why do I feel so abandoned? I am not healthy enough to go out to bars in the smoke, I can't go dancing and wheel an oxygen tank around, I get so tired so easily and walk so slow because it literally takes everything out of me to walk. I guess they are afraid I will hold them back. But, at least now I know who really is a true friend and who isn't. No matter how much I try to still be friends, nobody really tries with me. I am tired of living this way.. I am wasting days, months, of my precious life. This should be the prime time of my life to be doing what I want to do and it's not. I'm mostly homebound, something had to change.

With my mom sitting right next to me in the hospital, Dr. Pilewski came in and I said, "I'm ready, I want to be listed." He asked what had changed my mind overnight. Well, I will tell you what.. I am so sick that the new drug isn't probably going to help me much to matter at all, I could still be on oxygen even with the drug and I could still stay sick. I could possibly need a transplant in the near future anyway.

Sitting in my house waiting to die or a pill is not being proactive.. I have a life to live and I am beyond ready to start living! I have so many things I want to do after transplant and I can't wait another second!! I am ready to have my second chance at life.

-Katie

Wednesdays Appointment and Transplant Update

Dalton and I had a doctors appointment here in Pittsburgh yesterday. It could have went better, but realize it could have also been way worse! I will update us one at a time.
Dalton- started oral antibiotics, pfts staying steady, weighed an awesome 109 pounds (seriously, so proud!!!), Dr. Pilewski thought he looked great!, not feeling 100% but still doing alright.
Katie- weight 92 (lost weight), pfts down (now in the teens consecutively), got admitted for IV antibiotics and steroids, still gonna kick this!
We also have updates for the transplant list..
Dalton- trying to get the flight coordinated so that we are still able to live in KY while waiting for transplants, so not active on the list as of right now.
Katie- ACTIVE on the transplant list as of 12/12/13!
Not much has been going on lately with either of us. We stay at home mostly and just hang out with the dogs and each other. We are both SO ready to get out and live!!
Will update more later.. <3
-Katie

Thankful

I really am thankful for a few important things this year. There's family, friends, my home, food, my church family, and all the support from people around the world. Thank you and God Bless <3 -Katie

Motivation

It's times like these where I really need help figuring out something.. The difference between needing physical motivation and needing a lung transplant. What's the difference? Can I keep living like this and somehow find that physical motivation to get up and move although I wake up gasping for air? Or is it time that I really need to admit to myself that I need a lung transplant? I get very tangled up when trying to decipher the two and I honestly don't think you could answer unless you've been here. Even if you have been in this similar situation, the only person who knows what I feel like is me so I still feel like no one but myself can give a straight up answer. 

I guess I will go on continuing trying to figure out what I need.. -Katie

Jake and IVs

So, after I got home from the hospital I started feeling very abnormal in regards to my lungs. I called my dr and was restarted on IVs after I was seen in the local ER. Well since I've started I have been having some really weird feelings. I can't wait until their over so I can have a small break. 

My brother also needs prayers. He doesn't have CF but there is something wrong with his stomach. He has been in the hospital since yesterday around lunch. He still can't eat anything and is barely drinking. When I met him at the ER yesterday I couldn't believe how sick he looked. It was the worse thing ever to see him like that. You think I'd be used to hospital stuff and looking sickly horrible but I wasn't used to it being my younger brother. He looked a little better today but still not feeling well. All I want is him to be better. Not gonna stop praying. I love you Jake! -Katie

Herbal Tea

I just figured I would do a little update. I am still on IV antibiotics. I don't think they are doing what they are supposed to do. They just don't feel like their doing any good to my lungs. I have literally done nothing all week because it's been really cold and these antibiotics sure take their toll. I have been drinking a lot of herbal tea and it feels so good and warm when I drink it. I did get a therapeutic massage this week hoping that it would relax my muscles. They always stay tense especially on IVs. I think every time I go in the hospital I should get massages while I'm there!! That would be some good therapy! Marley has had something wrong with her eye but I think it might be clearing up. This morning she did have a lot more stuff coming out of it this morning. Poor girl. Next clinic appointment is 11/13, I hope to get off of IVs and come home! I want a break! Have a good weekend. -Katie

No Sleep!

I was awake all night. Still on IVs and upped my treatments to as frequent as every 4 hours. These IV meds are taking their toll on my joints and muscles so I'm going to get a massage today. There's a place about 2 minutes from our house that I have heard is good so we will see! Dalton went to go visit his family in Missouri so I've been hanging out all weekend at the house by myself. It's been nice to just have me time. Also I think I am gonna start going to the gym this week, it can only help! Hope everyone has a great week!! -Katie

Blank

There is nothing going on..
-Katie

Home

After an hour nap at a rest stop, a red bull (which does give you wings), and 20 deer (one being next to my window in the middle of the road!), Dalton and I got home last night (well, this morning) at 3:30 am!! Thanks for all your prayers and love! We go back for a follow up appointment in 2 weeks. -Katie 

Feeding Tube

I got my long feeding tube changed to a mini button! I am so happy right now about it!!!

The Real of Realization

So, I am starting on my third week here at the hospital and things have changed. This is not a sympathy post but just something I have wanted to get off my mind and what better place than the blog!?
Since my birth and through high school, my health was fairly decent. I went into the hospital max 3-4 times a year. I never let CF stand in my way of anything I wanted to do. Since I was little I have played sports, went out, hung out with friends, and believe me, done the crazy things every parent doesn't want to think their teenager is doing! In the past few years, things have been difficult. I can't keep count of how many times I just wanted to get up and run, like I did when I was in high school. My life has been spiraling downward and for the first time in literally forever, I feel like I barely have a grip on what is going on with my body and honestly it is not a good feeling. This year has been the worst of them all..
It all started when we began the journey of going through doctors and finally landing in the best hospital with the best care at University of Pittsburgh (UPMC). I cannot say anything but the best about the team that takes care of us. Our dr. in Cincinnati referred us both for lung transplants to UPMC. I can safely say that those 3 days of transplant evaluation were the toughest and longest of my life. I started having to wear oxygen in March and thus came the vulnerability that I wasn't used to. I have officially been in the hospital or on IVs more times this year than I have not. This year my body has been breaking and transforming into something so that I can continue to survive. With each admission, I break a little more and my body becomes a little more ready for transplant.
If you think about it, for someone who has been living so poorly that they would just want to go, go, go, get the transplant and start their life.. But me, my body is saying one thing and my mind is definitely saying another. My body is yelling at me to 'help, please I can't take this one more day' but my mind is saying 'you're still kicking ass, you don't need a transplant right now'. I tend to lean towards my minds thoughts more than my bodies feelings and I have always been this way.
In the past 3 weeks I think I have began preparing myself mentally and emotionally and my physical health is ready. In my mind I am still being cautious and making sure it is the right time. I am currently not on the transplant list right now because I have to do a couple more things for insurance.  Although I am sick, and in the worst possible health I have ever been, I am slightly putting those things off to make sure I am ready. I keep fighting with myself and no matter what anyone says to me, whether it be opinions on what I should do, or what I shouldn't do, I don't take what they have to say into consideration.
Over the last few days, I have realized what it means to be sick. All the other times in my life, I have taken a couple of weeks of IVs and then jumped right back. I didn't jump back this time. In fact, I am still sitting on the floor because my knees keep giving out. The IVs I feel haven't worked very good.
Over the last few days, I have also realized how important a positive attitude is and how important laughter is, how important friendships are, and how quickly your body can take a turn for the worse. The only thing I want to do is keep laughing a lot, keep my positive attitude that I have had all of my life and trust me, if I haven't lost it by now, I never will, and see my friends that feel like family who I used to have but no longer come around.
When I finally realize what needs to be done, I'll do it. For now, I am just going to continue with the punches.
-Katie

(I might update more later on but for now this is it)

2 Weeks

 

Today is officially the end of the second week of us being here in the hospital in Pittsburgh. Things have been somewhat challenging and we haven't had the best two weeks. But hopefully in the next few days we will be getting to go home. Some new things have happened..
1. We both have to wear our bipaps at home because of our high CO2 levels.
2. Instead of having to carry around big tanks, we are going to get to go home with liquid oxygen which will be way easier to carry and can even be carried in a little backpack.
3. Katie gets her feeding tube switched out for a mickey button which is way smaller and much easier to take care of.
All in all, it has been a crazy past two weeks and we really hope we get to come home soon. We also have a unspoken prayer request so please pray that the Lord guides us to make the best decisions.
-Dalton and Katie

Pitt Bound

Welp, it is time for our monthly appointments in Pittsburgh next Wednesday so we will be going up on Tuesday. I really hate the drive because it is boring! Nothing to look at until you get to the Pittsburgh bridge! Dalton and I have both been on several weeks of IV antibiotics. I just want a break from them! Oh and an update on being on the transplant list.. Dalton isn't on right now because he is still waiting to get his stitches out and I am not on it right now because I have to get a test done but we will be on again. I will update again after our appointments.. -Katie

Update

Well, we thought we had an appointment this Wednesday but nobody could seem to find us scheduled in the computer so we had to reschedule for next Wednesday at UPMC in Pittsburgh. At least we didn't drive all the way up there and then not be able to get in! Dalton and I are both still on IV antibiotics at home. -Katie

Family Time

Dalton and I are really blessed. Of course we live here in Kentucky surrounded by my family and even though we are 8 hours away, most of his family attempts to visit us. We love having his family come out and we appreciate everything they do for us. Some of the most memorable trips have been when Daltons dad and grandma Prager came out to our house so that they could go up with us to be evaluated for our transplants! My mom also went with us and it was nice that we were able to spend so much quality time with one another. Earlier in the summer Daltons dad, his girlfriend Jody, and brother Nathan came out and spent time with us and it was so fun! Dave, Nathan, my dad and my brother Jake made new shed doors for our shed in the backyard. It was actually kinda funny to watch the boys finally do work while Jody and I took pictures of them! Just a couple weeks ago Daltons grandma and grandpa Maze came out to visit. His grandpa put in our garbage disposal into the kitchen and his grandma and I watched 6 straight hours of the history channel. I always enjoy when his family takes time out of their busy schedules to come visit us which makes me happy to say that his brother, Nathan and his dad are coming this weekend! We can't wait to see you guys and we love you!!! -Katie

Finally Gave In..

I finally gave in and called clinic. Things are really bad in my body right now. I can't get past it without the help of extra medicine and so I am starting IV and oral antibiotics. I don't want to be admitted and travel all the way to Pittsburgh so I hope to control things here at home. 

Dalton's on IVs, I'm on IVs. A little prayer can go a long way. <3 -Katie

The Last Month..

So I have decided we have definitely gotten off the blogging trail and we need to get back on! Since our last entry on August 25th, a few things have happened.. I turned 23 on August 26th! Take that CF!! We had a doctors appointment on August 28th. Things went okay. Things are literally about the same as they were before. We are both just hovering in the same place that we have been previously. We got to come back home to Kentucky. Dalton started IV antibiotics and he seems to be doing better than he was before. We are both adjusting to the weather change. I love it. It feels so much better than all the heat and humidity but I am definitely not looking forward to it getting really cold. Daltons Maze grandparents came out and visited a couple of days. We had fun with them! We really enjoyed their company. My aunt and uncle from Australia are leaving on Thursday.. My Mamaw turned 87! We had a big party for her that lasted a few days it seemed like! Daltons Grandma Prager also had a birthday on the same day. I really think that is about it. Just trying to enjoy being here at home. I went out to lunch with my friend Kelsey the other day for a couple of hours. It was nice to have girl time and get out of the house! Dalton and I also went to the drive-in movie theatre to see Elysium. I didn't really like it and ended up falling asleep but Dalton said he thought it was okay. Bo and Marley are more cuddly than ever. All they do is sleep! I love spending my time with them! My brother got a job and it felt so weird to see him working. These things are all my random happenings within the last month.. -Katie

Family

I have been blessed to have such an amazing, supportive, loving, caring, do anything for you no matter what kind of family. Today my mom came over and did laundry, cooked for Dalton and I and cleaned up everything from our yard sale we had on Saturday. Every time our yard needs mowed my grandpa does it for us, my dads side of the family goes above and beyond when it comes to doing anything for us. I just honestly couldn't be happier with living here among people who truly show they care. Nobody talks about one another behind their backs, we all just love each other and cherish every moment we get to spend together. I love all of my family so much and am so blessed to be able to go to sleep tonight feeling so loved. -Katie

Puppies

I've been spending a lot of time with my puppies before I have to go back to Pittsburgh. I'm hoping we're allowed to come back home after next weeks appointment but in case we aren't I will have plenty of puppy time beforehand! Also, we are having a yard sale here at the house this Saturday. A bunch of family is bringing stuff over so hopefully we can get rid of some things. It has been extremely hot the past few days! I hate going outside because its so hot and humid but I hate staying here in the house too. Not much going on here. Like always. Have a good weekend! -Katie

A Lesson Learned

I have learned a valuable lesson after the influence of recent months. A lesson a lot of people learn a little too late, if at all. I do not claim to know the secret to happiness, not by a long shot. I have, however, discovered that if you wish to be happy, there is one skill that is absolutely vital for you to obtain: the ability to let that which does not matter truly slide. Someone insults you? Be amused. Your kids are bothering you? Give them ten minutes of fun attention. Hate the way you look today? Accept yourself, because anyone who cares already has.
Save your worries, because believe you me, your life can go from boring or inconvenient to the scariest horror show you've never yet seen. I know, it's difficult to learn life lessons through word of mouth. I always have to learn the hard way. I guess it's from being so hard headed all the time. Hopefully there are some wise people out there who can glean a little something from this. -Dalton

Update

Nothing has been going on lately. Just wanted to update everyone and let you know we're still here! Our next dr appointment is on August 28! Make sure you follow us on Facebook.

www.facebook.com/dktransplant 

-Katie

Wanna Update?

Okay so sorry to keep everyone hanging here and not updating more often, life gets in the way of my internet time! I do have quite a few things to update everyone about and so here it goes..
1. Dalton got out of the hospital last Saturday, August 3rd. He is doing good. His stomach is healing up just fine and we are just working on staying healthy out of the hospital. We have actually been feeling pretty decent here lately and have gotten to enjoy each other and family.. Which leads to my next update...
2. We got to come home last Monday. We are in Kentucky for a couple of weeks. Dalton is not currently on the transplant list so we don't have to worry about him getting the call. I am on the transplant list and if I get the call before we are back in Pittsburgh there is the option to drive back for now. We are really enjoying spending time with family, our little puppies, we are going to get to go to church on Sunday and we are just really happy and comfortable here, so that is why they let us come home for a bit.
3. We have appointments coming up here in the next couple of weeks which is when Dalton will hopefully be put back on the transplant waiting list. He is not currently on there right now because of his stomach but hopefully by then all will be healed.
I know I say this a lot but I just wanted to say thank you to everyone who prays, calls, texts, and supports us.. We honestly couldn't do this without you! <3 I will try to update at least two times a week until one of us gets 'the call'.. -Katie

7 South Tower

So, Dalton is back on the floor today and it is a good day! He is looking great in here and he is feeling that way too. The only thing we are waiting on is to see when he will get his drain from his surgery out (either tomorrow or the next day). As soon as that happens we are outta here! This hospitalization is coming close to an end, finally, and we couldn't be happier. When I walked back up on the floor today (after not being here since Friday) everyone was so friendly. It was so nice seeing everyone after a few days. So today I am just hanging out with Dalton. We brought him lunch from Popeyes so he was happy!
Today a home dietician came by the place we were staying for me to check on how the feeding was going. I think they are going to be changing my formula around.
Just also wanted to give a special thank you to Daltons grandma Prager for staying with us for the past week. She has been very helpful during these past few days. It really is great to have such a good support system.
Keep the prayers coming!
-Katie

See ya ICU!!

Dalton is finally out of SICU!! He is on our regular floor now, 7 South Tower! I am so happy! I was able to go over and spend a few hours with him! I am happy to report he was doing and looking good. His surgical site looks really good. Got his catheter out. Dr said that discharge is planned for Friday! Yayayay!!!

I had an appointment today. Not bad but not awesome. PFTs down a little, not sure why. Continue on oral antibiotics. I am getting the Tobi podhaler!!! Which is a new way of taking a medicine that normally takes about 10-15 minutes inhaled and it takes it down to about 30 seconds. Weight stable. Going to switch out my feeding tube down to a small version called a Mickey button in a couple of weeks. Still active on the transplant list. 

Both just keep on keeping on. Thanks for your love and prayers! -Katie

Update

I was just thinking that I'd give an update on Dalton. :) 

Today was an alright day. I was over there from about 12-6. He had to have some blood because his counts were low which we don't want but it's done now. His surgery site is looking good. Still some stuff draining out. Not sure when they will take the drainage out. He is trying to ween down his pain meds, they're doing good with that. His anxiety is a little increased but that is no surprise. He is doing so good and he's being so strong. I just love visiting him. He is still in the SICU (Surgical Intensive Care Unit). They are waiting on a bed to become available for him to move up to the regular floor, hopefully that will happen tomorrow. I can't think of anything else to report. Just please keep praying and don't stop.. We need all you can give.. -Katie

Dalton..

He looks so good this morning. He looked at me and squeezed my hand...

He got out of surgery sometime while I was asleep last night. The past 24 hours have been a blur to me and I'm sure to Dalton. We will get through this and more. This is just the beginning. Will explain more later. -Katie

Dalton

As you all know, Dalton had surgery on his stomach a few days ago. Just as we were about to leave, they removed his staples. Well all of a sudden he looked down and his intestines were hanging out of his belly. So we are still here and won't be leaving tonight. I'm discharged but I will be staying here with him. This is a little set back. Will be sewn up soon. I will keep you posted. -Katie

5 Weeks

Well it's been five weeks today since Dalton and I were admitted into the hospital. After bowel obstructions, surgeries for both of us, sugar problems, episodes of breaking down to episodes of feeling at peace, Daltons birthday and our 2 year anniversary, this had been one heck of an admission. We made it to July 26, we are finally being discharged to stay at the family house...finally. -Katie

Feeding Tube

On Friday I had surgery to get a feeding tube. I am happy with my decision because later on you never know what could happen. -Katie

Check out my Facebook bracelet page! www.facebook.com/braceletsforbreath 

Create Your Own Bracelet

Check out the 'Create Your Own Bracelet' tab! -Katie

She'll Do Great!

As you all know, I have been out of commission for the past handful of weeks. When my surgery happened, I experienced things in recovery I was not prepared for. The road from the ICU to my comfortable unit here on the floor was a little rocky, to say the least. In the worst of those moments, however, I heard warm and joyful conversations coming from somewhere I could not pinpoint. The sound was just barely audible, like a cell phone from under a pillow. These voices never left me. They reminded me of my friends and family, of simple everyday to day living, even if only for a second. But that was all I ever needed, was just another second.
I've been out of the ICU a couple days now, and in hindsight, is so obvious where those voices came from. Each and everyone of you. Everyone who has prayed for me. You have all done a momentous deed for me with the Hand of God when I needed it the most. Thank you.
Now, as my sweet wife did for me, I am asking for your love and prayers. She just gave me the "See You Later" kiss. So please everyone, pray for Katie. Pray for complete success. Pray that she keeps a soft smile as she sleeps and awakens well rested! -Dalton

Feeding Tubes and Enemas!

So here is just a quick update of what is going on..
Dalton is doing good. His bowels are back to working normally. He is still having some issues with pain though (which is expected since his belly was cut in half)! He also ran some fevers yesterday so I am not sure what is going on there but I think things might be moving forward.
Here in just a little bit I will be going down to get a feeding tube (click on feeding tube to see what it is). I am having surgery here in just a few so I won't be in commission tonight to be able to work on my bracelets. I have sold so many here in the hospital and I only hope we get out of here soon. The doctor and nurse practitioner said that we may be transferred to a longer term care facility until we feel good enough to go to family house. Dalton will update on how the surgery goes.. Love to all and thanks for following. -Katie

By the way.. Our 2 year anniversary was on July 16 <3 I fall more in love with this man every day of my life..

Yay!!!

Yay! Dalton just got back from ultrasound and it turns out he doesn't need a drainage tube put it! They said it will go away on its own! So happy about that! -Katie

Hospital Week 3

Here we are. We've been in the hospital for 3 weeks and 2 days. My mom and Dalton's grandparents came to visit. They both left this morning. We also had a visit from Dalton's mom earlier in the week. Dalton and I are both so fortunate to have such a wonderful support system. And as always, so thankful for my dad because our puppies are getting spoiled to death! There are a few updates for Dalton and I, so here ya go. 

Dalton is doing better. He had stomach surgery almost 2 weeks ago. He then got stapled back up 2 days after that and since then has been in the ICU until Friday! So he is now back on the regular floor. Today he is having to get a drainage tube down in radiology because he is still retaining fluid. But that will be a simple procedure. Just pray that this gives him some relief. 

For me, I am doing alright. Basically I am just waiting on Dalton in here. I'll be released as soon as Dalton is. 

Overall we are both doing better. We are both officially listed for transplant. And we are both happy, we just miss our puppies!

Please pray for us to get out of the hospital soon and for this drain to work for Dalton! Love and Peace! -Katie

Prayer Request

Health wise things are alright with the both of us. But we really just need some extra prayers right now. Please pray that dalton can get comfort through the pain he is experiencing and just help him get some good sleep. And please pray for me because I am so sad and not feeling like I'm being an adequate wife. I feel like I should be able to take everything and make it okay and I can't. Thank you. -Katie

Update from the Hospital

So here I am, in a big city, on a Saturday night, spending it in the hospital, just like the past two Saturdays. Things are looking better though. We are shooting to be out of the hospital and back at Family House by our two year anniversary, July 16. I am really praying to God we are out by then. Not only have we spent the past three weeks in the hospital but we have also paid for our room at the Family House everyday the past three weeks and we aren't even staying there.. It's expensive.

Happy

Dalton's surgery went great today. He's off the ventilator and is awake and talking. He is doing really well and we can't thank you enough for your love and prayers! -Katie

Surgery Update

The doctor called me and told me his surgery went great! They cleaned him out some more and while he was under they also did a bronc to clean out his lungs. He is on the ventilator now but will work on getting him off in the next couple of hours. Please keep praying! He's not out of the woods yet. -Katie

Surgery

Dalton went back into the OR around 11:00 am. I'll update when he gets out. Please pray! -Katie

Update on Dalton

Here's to answer any questions that you may have about Dalton. 

This past weekend he had a bowel obstruction. They tried everything to get things to move. Unfortunately, they had to resort to their last option which was surgery. They went in yesterday and cleared out everything which was a success! They left him open afterwards so they could go back in on Thursday and make sure everything was clear and they will sew him up then. 

One of the major things the doctors were concerned with was being put on the ventilator. Since Dalton's lungs are already so compromised it was a thought that he may not come off the vent. Well, he came off the vent last night around 7:30! Everything went perfect and now he is preparing for his surgery to be put back together tomorrow. I hope this answered any questions you had as to what was going on. Hopefully we will get out of the hospital next week sometime. Please say an extra prayer for Dalton for tomorrow that his surgery goes smoothly.. -Katie

Long Day

Today was a very long day. Here is a picture of me sporting Dalton's wedding ring. Keeping it safe while he was in surgery. Thanks for all of your prayers today and everyday. -Katie

Pray

Please pray for Dalton. He's in the OR for a bowel blockage. Please no calls, I will update the blog as updates become available. 

Life on the Transplant List

So to update: 

Dalton- he is now on the transplant list. He is about 2/3 of the way down so we will have a little bit of a wait until he gets lungs. They are planning to reevaluate him to see if he can be moved up. 

Katie- I am still not on the transplant list. Dr. Pilewski said when they meet Tuesday evening he is going to bring me up. So who knows what will happen from that. I will find out Wednesday what they're gonna do.

Please pray. 

Can't Sleep

I'm so homesick. I really miss my family, my puppies, and spending time with my family on Sundays. :( -Katie

Hospital Visit #1

Yesterday we were seen in clinic. In result of that clinic appointment, we are both now in the hospital. Nothings going on here. I have been trying to sleep and just relax from the move. Daltons PFTs were up a little so thats good. He thinks it is from his c-pap, I do too. We are on the same meds as always and just crossing our fingers that we improve!
Thanks for all your prayers.. -Katie

Address

Many people have been asking for our address here in Pittsburgh. Our address is:

University Family House

Dalton and/or Katlin Prager

116 Thackeray Avenue

Pittsburgh, PA 15213

City Life

Well we had planned to move to Pittsburgh on Monday morning but didn't arrive until Tuesday around 6:00 PM. We left on Tuesday around noon and made it with no problems. We have been doing absolutely nothing today. 

I was telling Dalton, now is the time for the real blogging to begin. Up until now our blog has been filled with random thoughts and updates when nothing had really changed. But now is the time to update! 

We are living through many emotions right now, but I think that's expected. Just gonna keep holding onto our faith and stay strong for each other and I know we will get through it.

We talked to the transplant coordinator Tuesday night and he was off today so we will be talking to him to get things started in the morning.

I can't wait for you to take this crazy ride with us. Hold on tight!!! -Katie

Update

Just to update everyone. We had plans to leave around noon today but we had problems with our oxygen company. The issue is resolved now and we will be leaving first thing in the morning. -Katie

We're MOVING TO PITTSBURGH!!!

After my fight with insurance for so long and after my happy denial I am so so so beyond happy to say that we got the call today that DALTON WILL BE PUT ACTIVE ON THE LIST!! So, as soon as we move up there we just give them a call and he is on there! We are leaving Flemingsburg on Monday just so we can have the weekend to get our affairs together. Then the REAL waiting process begins!! I am so beyond happy! Praise the LORD, this is the real time that we need your prayers... They hopefully I will be on there soon!! PEACE and LOVE -Katie

DENIED!

Well, the thing I have been working on since April is DONE. OVER. Cigna, Daltons primary insurance, finally DENIED lung transplant services which is a BLESSING!! I am so happy to be done with them! I have been fighting for 2 very long months and it is finally over. Daltons mom took him off of her plan and thankfully I never have to deal with that insurance company ever ever again! This makes the process move a lot faster and we are now working with Medicare to approve the lung transplant process.
More awesome news, Dalton is off all of his pain medicine and he is doing so much better. Things were getting really rough there for a while to the point of I was unsure if I was going to be with him much longer. Everyone started noticing how fast he was decreasing and I was getting worried. But now, he has been off his pain medicine for 4 weeks on Sunday and he is so much better now than he has been in atleast 6 months. He is gaining weight and he just looks good and he even acts and feels good. I am just really happy with that.
We have a clinic appointment tomorrow, and I am anticipating IVs but I do NOT want to go into the hospital. My fevers are still coming and going but I want to stay out and enjoy Fathers Day weekend with my dad this weekend.
Love to all of you and thank you to all of our faithful readers! -Katie

Clearing Any Confusion

I'm just gonna explain real quick as to why neither Dalton or I are on the transplant list. 

Our first step was getting evaluated which was done and we're both good candidates but neither of us are listed. Insurance is so screwed up right now, we have literally been fighting with them since April to accept Dalton for transplant. We haven't even started on my insurance yet because I just want to focus on one at a time. Things are very confusing with insurance and until that gets straightened out, nothing else can be done. 

Just been hearing things about one, neither, or both of us being listed and you can't always believe what you hear. This is the truth. Neither of us are on the list...yet. -Katie

Tired..

Well we are STILL waiting on insurance and its really starting to get to me now. I am so sick of fighting with everyone to approve this. No one gives me updates on anything, no one returns my calls, I have had it. Something will be done on Monday if its the last thing I do. I am just tired of people dragging their feet. 

Anyway, an update on us. Dalton had his second sleep study done a week ago and we should know the results of that on Monday and then they'll be able to get his bipap delivered! They said he would have more energy and it would make him feel lots better, so we are both excited for that. I have been running fevers off and on for the past two weeks now. We both had two really good days, last Monday and Tuesday, but since then, I have felt horrible. I have slept nonstop the past couple of days and decided to give in and call clinic today. It was my hopes to start home IVs but they want to see me first. So Dalton and I have an appointment on Thursday in Cincinnati. The plan that we have is to start IVs Thursday with no hospital. Although the hospital would be beneficial for the both of us, I just refuse to spend my last little bit at home in the hospital. If it comes down to it, I will come home feeling yucky with no IVs before I give in to an admission.

Dalton's dad, his dads girlfriend, and his brother came into town to visit us today! Most of the family from Missouri has visited us now and we love it! We are so happy that they came in just to spend a couple days with us. It means so much!! 

As most of you know I have started my own little business. It's mainly just a small business to keep my mind occupied since I can't work and to make a little extra money for living expenses when it comes to transplant. Well I have some very EXCITING news that I can't wait to share!! Sorry that was such a tease but I promise the next blog I do will be all about it! 

Peace. Sweet Dreams. And Always Tons of Love. -Katie

Just an Update

Video Update from Yours Truly!! -Dalton and Katie

I Want Enlightenment!

I love the feeling of enlightenment, a sudden instance in which you fully understand the world around you and your role in it. You see the wicked clearly for who they are as clearly as you see the righteous standing behind you!

Ah...yeah, I dont think so. If anyone felt emboldened by that second sentence, you need enlightenment. -Dalton

Normal

So, I am pretty sure I'm done with the whole 'having CF' thing. It is getting old now. Tired of sitting around waiting for life to happen. Tired of sitting around waiting for a miracle drug that's going to cure us all.

Party!

We have had a couple going away parties. There was one in Missouri when we went to visit for the last time and then we had one a few weeks ago at my aunts house here in Kentucky. We aren't really sure when we are leaving so we just want to make sure how much everyone knows we love them before we go. Soo, if there are more parties, don't be surprised!!

*Friends

*Kyle and Dalton

*Cousins

 

*Dalton and I

 

 

 

And also, Dalton threw me a surprise graduation party!! I was seriously so surprised! He is the best! -Katie

*We almost never wear o2 in our pictures.. Doesn't suit us well!

*My little brother and I- my rock!

*Mommy/Daughter

*I graduated!!

*Family (look at my little cutie Bo in the bottom left)

Good Day..

Today was a good day. Been doing a lot of crafts, just keeping my mind occupied. God is great. -Katie

If you want to order a Dalton & Katie t-shirt or purple rubber 'Love Conquers All' bracelet the on the right side of the page there is a place you can choose what you want to order. When the paypal window pops up make sure you click on 'Continue Shopping' if you want to get more than one thing.. <3

Feeling

Just really feeling discouraged about things tonight. My bracelets, fundraiser that I'm trying to plan, everything. Good night. -Katie

Just a Friendly Note...

When you walk in to Wal-Mart or most other stores here in the US, there is usually a trash can and an ashtray. The ashtray might be tall with a hole in the top and sand in the bottom or it might just be a tray where everyones smoked cigarettes are there to look at (sick!). Anyway, most stores have some type of ashtray in front of their business. While said ashtray is there and very helpful to put your cigarette out before you walk into the store, it doesn't give you permission to stand there in the DOORWAY of the business and smoke and flick your ashes in the tray (and most get on the ground anyway). I honestly don't care if anyone smokes but when I am trying to walk into a store and I get the pleasure of walking right through smoke, I not only get disgusted but the slightest whiff usually makes me cough my head off. If you really want to smoke go ahead and do it somewhere other than in front of a business. Please. And when I please ask you to not smoke in front of the said business, please don't look at me and my oxyen tank and tell me to go blow up... -Katie

Emotional Night

I have been crying tonight and I am crying for a lot of different reasons.
One because I am just so blessed to have met such a wonderful man that I call my husband. I wouldn't be the same person if I hadn't have met Dalton.
Two, I am so blessed to have such amazing people in my life. I never would have dreamed so many people would have crawled out of the woodwork to support and shower Dalton and I with all of their love. From all of our family, to people at church, to people who have been buying my bracelets, to people who just volunteer for whatever is going on, it is honestly amazing.
Three, I just want insurance to work out, I want to move forward and I want to get this done with. Dalton and I have to live separate and we can't be together while one of us is transplanted and the other isn't so we aren't sure how long that will be. We could be apart for a year, it could be a few weeks. We really don't know. Maybe that's what I don't like, not knowing.
-Katie

Sleep Study

Dalton has an appointment tonight in Cincinnati at a sleep study office. He will hopefully be approved for a bi-pap machine. This will only be worn while he's asleep and should help greatly with his sleeping and tiredness issues. Pray that everything works out! <3 -Katie

Makes Sense to Me

In between naps, treatments, and making bracelets, Dalton and I do actually spend quite a bit of time talking. We talk about all sorts of things; life, transplant, school, work, death, family, love. Nothing slips under the radar. But yesterday, Dalton and I were talking and after the conversation I just couldn't stop thinking about what we talked about, in fact, it has been on my mind since.
No matter where we are, I almost always have my phone with me. I feel that it is how I stay connected with the world. I can easily access facebook, I can call anyone, if someone buys a bracelet I can take their credit card information and send it straight to my bank account, I can literally do anything with the touch of a few buttons. While sitting down about to eat Dalton picked up my phone and said this isn't reality. I was so confused. What was he talking about? But the more he talked, the more I realized he was right. Nothing exists outside of what we can touch and see and feel. Nothing. Sure it's out there, but it doesn't exist. It isn't here, I am not experiencing it, therefore why does it matter. Honestly, the only thing that should matter is what is happening in the here and now. Even God can't go back and change the past and nobody seriously knows what is going to happen in the future. The only thing that is for sure, the only thing we are 110% certain is happening is what is going on right in front of our faces. Why do we spend so much time on our phones looking at facebook? Why does it matter? The pictures and comments that we see on there are completely irrelevant to our lives and what is going on in the here and now, what is going on in real time where you are.
<3 -Katie

Associates Degree!

I graduated in high school in 2009. I went on to college that August and in September, my whirlwind of hospital stays and health problems began and have yet to let up. Four years later, here I am! I am a graduate of Maysville Community and Technical College with an Associate in Arts degree. I was feeling down about two weeks ago because it feels like most everyone that I graduated with is graduating with the bachelors degrees this year or are moving on to bigger and better things such as med school. But, then I took a second and realized, all of our paths are different. Nobody that I graduated with has dealt with what I have the past four years and I haven't dealt with what they have either. We are on our own roads and my road has finally led me to receiving my degree! I have worked SO hard for this degree. There have been teachers who haven't understood, ones that have worked with me to help me through, tons of make up work, tons of missed work, and my advisor that I have been so blessed with to help me get through it all.
My advisor, Wendy Noble, has been my rock this past semester. She has been there for me, fought for me, helped me, talked me through problems, and walked with me every step of the way. I don't know how I got so lucky to have such an amazing advisor, but she is honestly one of a kind. Thank you Mrs. Noble!!!
I am going to leave you with this. Never give up. You can do whatever you set your mind to. I have been through everything to get this degree that would normally only take two years but here I am four years later and I am beyond happy. "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13

 

Congratulations Are In Order

Today was Katie's college graduation. Despite everything we're going through, Katie worked hard and persevered through the pain to earn her Associates Degree.  I'm so proud of her! She's living proof that anything can be overcome with enough determination. I love you Katie Prager. You're my hero.
-Dalton

Follow Up Appointment

So, yesterday Dalton and I were seen for our follow up from IVs. We are pretty much the same as the last time. PFTs are down slightly and I gained one pound. Our doctor wants me to get a feeding tube again. I don't really want another one. I had one for like 3 years until it fell out and then didn't want to replace it. But I guess if I have to get one it wont be anything new since I have had one in the past. Today we had another appointment in Cincinnati for a pain doctor. I have never been one to take pain pills if I don't have to. Well, today at the pain clinic it just felt sketchy. Dalton and I do have pain problems but we both felt so uncomfortable at that place so we left. There were people sitting in the waiting room that looked so high on drugs, it actually made me nervous to be in there! I am going to talk to our doctor and see if we really have to go there anymore. Our doctor also started both of us on inhaled ceftazadime. So, I am ready to get that started when ever we can. I am also getting a lot of bracelet orders and I still haven't figured out a cost efficient way to send them. If anyone has any ideas, please let me know! Going to bed. Thank you once again for all of your love!<3 -Katie

Eyes To The Ground

Katie and I had a CF appointment in Cincinnati today. They decided to do another five days of IV antibiotics for us both, as well as nebulized ceftazidime for me when the IVs are finished. In other news, we're still banging heads with insurance regarding my transplant. Their nickel and diming is all that stands between me and that list. I don't know how long they think I can wait, but I can't play their little game anymore. It's time for results on their end. In the mean time, we're just trudging on, eyes down watching one foot step in front of the other. It is nice, however, to see Katie stepping right beside me. I would be long gone by now if not for her.  -Dalton

A Good Weekend..

Dalton and I had a good weekend. On Saturday my friend, Kelsey, and I got pedicures. We both got purple polish because May is CF Awareness month. Later on Saturday my family had a BBQ for Dalton and I and some friends came too. It was really good seeing some people that I used to be close to for a final goodbye. Transplant is getting closer. I can feel it. As soon as insurance gets settled for Dalton, I will begin working on my insurance. There are so many problems with both of our insurances it's unreal.
We will keep everyone posted as something happens. -Katie

Bracelets!

I have been working on bracelets all day! I have so many to send out and can't wait until everyone gets them!
Dalton and I have a BBQ this weekend at my Aunt Nancy and Uncle Jeffs house. It will be mostly family and we invited some friends.
Dalton and I are still on IV antibiotics. We have a doctor appointment on May 7, so I guess we will see how we are doing then. We are both so ready to move to Pittsburgh.
-Katie

Update from Missouri

So Dalton and I came to Missouri last Thursday for a few days to visit some people for the last time for a while and to also have our Pre-Transplant BBQ! The BBQ was a huge success and we had so many supporters there!!! We also sold tons of t-shirts and support bracelets! It feels so great to have so many people who love us!
Saturday night I also had a surprise graduation party! I was excited and couldn't believe it!
We had family pictures done with everyone and it was great. I'm so glad we we were able to get family pictures with Dalton's cousins, Kayla and Hannah, because after transplant we won't be able to be with them because they have CF. The fact of the matter is we won't get to hang out with anyone; CF, pre-transplant, or post-transplant. This is one thing that hurts me the most. Three of my best friends have CF and will be pre-transplant. Kayla, Hannah, and Lauren have been my go to girls. I can always trust and lean on them for anything. We have so many great memories that I will always cherish and I love them all so so much. I'm so glad they were all there to send us on our way on Saturday night. They are the three strongest ladies I know and I'll always be right here just a call or text away. I love you three to death! <3
I'm making myself sad because this weekend really hasn't been the easiest. A lot of things just coming up now that we are getting close to transplant but only God knows the plans he has for us.
Thank you to everyone for your support, love, concern, and donations. We love you! Will be going back to Kentucky first thing tomorrow morning. -Katie

Road Trip!

Hello Monday

Today started off just like every other day pretty much with blood draws at 9:00 am! There really is nothing new to report about anything. We are really just playing the waiting game and trying to get out of the house as often as possible. My mom is taking us to dinner later on so that should be fun but those are the only plans we have for the day. Tomorrow Dalton has an appointment in Westchester, OH (to be honest, we have never even heard of that place) to meet with a sleep study 00doctor so we can finally get going on this bipap deal. We are both still on IVs and it looks like we will miss pulm rehab again tomorrow because of his appointment. I think it will be okay, we will do enough running around tomorrow without rehab! I am still working on bracelets and we now have our purple 'Dalton and Katie' bracelets in. If you would like one, they are $3. I will tell you how to get one at the end of the post. Yesterday at church they took up a special Love offering for Dalton and I. I am seriously so amazed at how many people show Dalton and I such love and compassion. Everyone is always praying for us and we can really feel all of the support we have from everyone. We honestly wouldn't be able to go through this without everyone and we feel so special to have so many people care. I hope everyone has a happy Monday!! Remember, you woke up this morning, it is going to be a good day.
-Katie

*If you want an awesome Dalton and Katie Love Conquers All bracelet, message me your name and address at pragercf@gmail.com or on my personal facebook page after you donate $3 to www.gofundme.com/dkprager. (I think the min is $5 but the extra $2 helps pay for shipping on all of these orders). If you want more than one just let me know in the message and each bracelet is $3!





Hard Work DOES Pay Off

I graduated high school in 2009 and since that time, my hospital visits have become a lot more frequent. I started at Maysville Community College in 2009 and when I moved in January 2010, I transferred to St. Charles Community College. It takes most people about two years to graduate from a community college with an associates degree and most decide to continue their education and pursue a bachelors degree. I have been in and out of the hospital several times the past few years and have had to drop classes, have gotten behind, worked extra hard to get caught up, and done everything I could do to make sure I could cross off 'Graduate from College' on my bucket list. When we moved back to Kentucky last May, I found out what classes I would need and how long it would take to graduate. I found out that I could graduate by next spring if I crammed a few extra classes in. Well, after a couple of crazy semesters; in and out of the hospital several times, getting used to 24/7 oxygen, transplant evaluation, and pulmonary rehab, I can officially say that on May 10, 2013, I will be able to cross off 'Graduate from College'.
I am so happy with myself and although it is just as Associates degree, no one knows how hard I have worked for this. I have taken piles of classes, worked extremely hard when I felt good and when I didn't, and done everything in my power to accomplish this goal.
I want to give a special thank you to my advisor, Wendy Noble. She has worked with me to make sure I have everything done in time for graduation. She has been amazing to work with and has really helped me through this semester.
See ya at graduation!!!
-Katie

CF Clinic

Dalton and I had our CF appointment in Cincinnati yesterday. There really were no changes at all. Our doctor added some medicine to our daily routine, but no big deal. PFTs the same. Still on IVs and probably will be for another week or so. We have an appointment with the ENT doctor on May 7, as well as a CF appointment. We are still dealing with insurance issues for transplant. Hopefully this gets dealt with tomorrow and we can move forward with this process. We are going to St. Louis next week to visit and then probably move to Pittsburgh. I am not quite sure how this is going to go but it will work out!
Dalton and I missed pulmonary rehab today because of lab draws so we went to the bowling ally. We were the only ones there, imagine that on a Thursday afternoon. Will keep you posted if anything changes. -Katie

Savor The Moment

Today is just another step forward,  as is everyday. Since Katie and I will have to live apart from eachother during the time between our transplants, we're savoring every minute we have together. Ever since we got married we've only spent a few days apart at most. I pray our separation will be short. It's going to be hard on us both to go through everything with only webcam and phone calls for communication. So today, we're going to try and have a little fun. Maybe a movie or something. There's nothing like a good old fashioned date to stir things up a bit!  -Dalton

No Hospital For Now

Dalton and I are both on home IVs. We started today. We go to our appointment in Cincinnati on Wednesday. Not much else to report.

Reflection

I don't claim to be the best Christian. In fact, up until recently I hadn't regularly attended a church service of any kind since 2009. But this morning I was reading in my book titled, Jesus Calling. The book has devotions for every day of the year. This morning it hit hard. It starts out saying; Trust Me, and don't be afraid. Many things feel out of control... It goes on to say; Let Me lead you to the rock that is higher than you and your circumstances. These words spoke to me this morning. Dalton and I are in a very crazy situation right now and the only thing we can do is trust in God to get us through this. I just really felt that what I read this morning was uplifting and so true. Have a great day!!
Don't forget to tell my little brother Jake a Happy 20th Birthday today!!! Love you!! -Katie

Breakfast

Dalton and I are just enjoying our time together. We put on pajamas and made breakfast for supper tonight. We had fun together.

Discouraged..

Ever since I found out that I'm not eligible for the list yet I've been feeling pretty down. How much worse does this have to get until I can be listed? My quality of life sucks. I want to go out and be 22. I bet all of my friends from from high school are out tonight living it up. (I say high school because I haven't made any new friends since, I don't really leave the house.) No one even asks me to do things anymore because why ask someone who never comes. They don't know how bad I always want to say yes. So, some of my high school friends may be partying, thinking about going to Keeneland tomorrow, out driving with nowhere to go and I'm here at home. I was in bed watching TV at 8:30. I am mentally and physically drained. I know my new chance at life will come but why not yet? I'm trying to stay positive right now but even the thought of getting out tonight and going to have a drink sounds like torture. The thought of dressing up cute tomorrow in high heels and walking around at Keeneland sounds impossible. When will I get my chance to have fun, when I'm 30 and everyone I know has a kid and is staying at home changing diapers? I'll be like the old guy at the end of the bar who is drinking by himself. Of course some people my age have kids, and yeah I'd love to have a child. Anyone who knows me knows how crazy I am about Marley and Bo, our puppies. But, guess what? Like my life is being stolen from me now, it isn't possible for dalton and I to have kids now or later in life. What am I supposed to be looking forward to? -Katie

Transplant Update

The call that we have been waiting since Tuesday night for came today. There is good news and not so great news. Things could always be worse though and that is what we are focusing on at this very moment.

The good news: Dalton is ready to be put on the list. As soon as we get all of his insurance stuff worked out, he will be listed. This could be as early as Monday.

The not so great news: Katie isn't being listed at this time.

When we talked to our coordinator on the phone he said that we were both very good candidates for transplant. Dalton is sick enough to be put on the list and that is why he is getting listed now. However, Katie is on the line of sick to where she doesn't have a good quality of life but not sick enough to take an organ out and replace it with a new one. This isn't a huge problem because Katie could be listed in a couple of weeks, just depending on her health, or it could be another year (most likely not if you know her condition right now).

This is good news and bad news. Good news, because Dalton is getting another chance! He will hopefully soon, be getting new LUNGS and his quality of life will be amazing. Better than he has ever known it to be. Bad news because the time between Dalton getting a transplant and until after Katie gets her transplant they will not be allowed to see one another. They can be together all the way up until Dalton goes in for surgery and after that, they won't be allowed to be together until Katie is a month post-transplant.

However, the time between Dalton being listed and him getting a transplant, Katie could be listed and their transplants could be close together and they won't have to worry about not seeing each other. Who knows, only God.

So, this process is very emotionally and physically draining to the both of us. We won't be answering calls or texts tonight, but we will get them and we appreciate all of you. Thank you for standing with us at this time and although this isn't what we wanted, this is what God has planned for us. Please just don't stop praying. We will both eventually be breathing easy... <3 -Katie and Dalton

Family Portrait- 4/12/13

After this picture was taken it looks like Bo and Marley are both looking up. Maybe God is using them as a sign so that we won't stop looking up to Our God. He knows the way.

My Best Bud Is Growing Up!

As I'm sure you all know, Katie and I have two pups. Marley, she's our oldest, and Bo is a year younger. Well, Bo and I have been practicing in secret on him shaking my hand. Tonight, we tried it in front of Mommy and Marley, and he did it! I'm so proud of him. He's such a fast learner. I just had to brag on my boy for a minute. -Dalton

Anticipation

Well, we didn't get the call we were waiting for today. As most of you know, we are waiting on the call to see if we are candidates for double lung transplants. We have so many things going through our minds. Whatever the end result is, either both, one, or neither of us getting put on this list, I just want to know. I am very confused at this moment in time. I hate sitting at home not knowing what the next few months are going to bring us. But, I know, God has a plan for us, and he has from the beginning. -Katie

To: My Dad

Miss me, miss me??
:)
Love you Daddy!

No Donation Day!!

Today is our first No Donation Day! NoDoDay (sounds like 'no' 'doe' like the deer!!! and 'day') are randomly picked days where we want NO donations to any account. On NoDoDay we want messages, texts, calls, Facebook comments, blog comments, tagged pictures of us, prayers, and thoughts! We want NoDoDays to just be about positive thoughts and love because although this process is extremely costly, the only thing that is going to get us through this is You- Our friends, family, adopted grandmas (love you Jenny!!), pre and post transplant friends, cysters, fibros, sisters, brothers, church families, teachers, neighbors, and especially each one of you that we haven't met and probably never will meet. I hope each of you will participate in NoDoDays!

Transplant Team

The transplant team at UPMC is meeting today about mine and Dalton's cases. Please please pray that we get accepted. I had a bad dream last night and I hope it was just a dream. Please just start praying and don't stop. Instead of making a donation today, spend the time you'd be putting in your credit card information and just talk to God. Thank you to each person who is here for us. -Katie

Farewell

Daltons dad and grandma Prager went home yesterday around 4:00. We hated to see them go but know they have to get back! We will be traveling to St. Louis soon just to visit some people and get a few things taken care of. I know we would both love to see anyone that would want to see us! We don't know what our future is going to hold so this is kind of like a goodbye tour (just in case).

We got more oxygen delivered to the house yesterday! I thought we were going to be stuck here the whole weekend but thankfully we won't be! Marley and Bo are doing good and they were glad to see us. We have updated this blog page with different donation routes and jewelry information. Please don't feel like you have to donate to us, because you don't. As long as you pray, that is certainly all we ask.

We won't find out anything from testing until next week sometime. We both haven't really felt good since we have been home so I hope that goes away soon. Please just keep praying for good news and strength to go through this whole process. Love -Katie

Bracelets for Breath

I have started selling bracelets on Etsy. They are a little more expensive on there just because I have to cover the costs to list and ship. I have found out that shipping is not cheap! If you want to check out my shop, I will be adding more soon. Love! -Katie

www.etsy.com/shop/braceletsforbreath

Evaluation Complete!

There are so many new things that we learned this week about transplant and ourselves. We had many tests done and we attended many meetings with different people on the team. We are in the car on our way home now. I will post a more elaborate entry when we get home. I definitely felt Gods presence all week. -Katie

The City Of Bridges

This is the first new city I've seen since Cincinnati, and I love it! I always thought of Pittsburgh as a boring city with nothing to offer, but I was mistaken. The people here are friendly, there is a lot of history, the sun is always shining and the streets are bright and clean. If we end up getting transplants, we'll have to remain in Pittsburgh for at least two months post op, and I don't think I'll mind one bit. -Dalton